• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Best Doctors in US for CFS/ME?

chilove

Senior Member
Messages
365
It just occurred to me that I have really good insurance and a job that I can work from anywhere so I could move to wherever a really good doctor is. I'm tired of trying to figure this all out on my own here in Austin, TX.

Thanks!
 

Seven7

Seven
Messages
3,444
Location
USA
The hardest questions is that is currently taking patients. You might have to do a list and work your way down, just get in line with everybody. I got in line and I was lucky to get in with Dr Rey at klimas on time, I have been in treatment for 2 years and still on call for all the others (I am still in line with most).

Another thing is I didn't know what was my issue, mold, Lyme or whatever so I Wanted to get into one of the most generic ones that would test for me everything : Like Klimas, Peterson.... (instead of a neuro CFS or stomach like Shia.).

Good point you might want to see how it goes first and maybe do some travel before doing a permanent commitment, you might have to try a few before you settle.
 

chilove

Senior Member
Messages
365
Oh wow, I didnt know Skype was an option. That's awesome. Ok, who should I try to get an appointment with?
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
Like @Inester7 said, do you want someone who does everything across the board or do you know you want someone who does viruses? Here is one place to start (see the link below).

Most doctors, I'm sure, will want to see you for the first appointment. Then after that they MAY do Skype but you have to ask them when you call to see if they can see you and when. I think Lapp would want to see his patients once a year but would do phone consults in between.

You need to do some research then figure out who you want to see then go from there.

http://forums.phoenixrising.me/index.php?forums/me-cfs-doctors.32/
 

Sushi

Moderation Resource Albuquerque
Messages
19,934
Location
Albuquerque
Like @Inester7 said, do you want someone who does everything across the board or do you know you want someone who does viruses? Here is one place to start (see the link below).

Most doctors, I'm sure, will want to see you for the first appointment. Then after that they MAY do Skype but you have to ask them when you call to see if they can see you and when. I think Lapp would want to see his patients once a year but would do phone consults in between.

You need to do some research then figure out who you want to see then go from there.

http://forums.phoenixrising.me/index.php?forums/me-cfs-doctors.32/

I think that in order to prescribe, a US doctor has to see you once a year. KDM will also followup by phone (maybe skype?) between face-to-face appointments.

Sushi
 
Messages
2,562
Location
US
If I were you, I'd move near a good M.E. doc. After you see them twice and like them.

Also do you need a doc to be in-network for the plan you have?
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
I personally wouldn't move if a doc is willing to have phone appts. Things happen, why uproot the rest of your life?

It's not that easy to make contacts and get setup. You need to did new dentists, new pcp, too much stuff IMO
 
Messages
2,562
Location
US
I personally wouldn't move if a doc is willing to have phone appts. Things happen, why uproot the rest of your life?

I assumed she was considering moving anyway. I believe she has a thread about where to move to. If moving to another state, I would pick a location within 1 hr of a good doc.
 

SOC

Senior Member
Messages
7,849
I personally wouldn't move if a doc is willing to have phone appts. Things happen, why uproot the rest of your life?

It's not that easy to make contacts and get setup. You need to did new dentists, new pcp, too much stuff IMO
Some treatments, like Ampligen or cidovir, you can't get unless you're near the doc. The same may be true of other of the experimental treatments -- Rituximab, for example. That would be a reason to move closer to the doc.

There's also something to be said to having a doc nearby who understands the illness so you're not always fighting your local GP for every little thing. The ME/CFS specialists might also have other specialists (cardiologists, endocrinologists, neurologists) with whom they have working relationships. You'd probably get better treatment there also.

I see my specialist about twice a year and by phone/email in between. It's hugely better than not having an ME/CFS specialist, but I can see how it could be better if I were closer.